final stages of psp

my dad has been suffering with psp for a long time in only the last few months he has gone from still having his wits about him joking able to talk but slowly able to still eat some solids to now unable to talk without understanding what he is saying confusion anable to eat puree foods without gagging falls heaps and is now confined to bed only this is changing rapidly over weeks can someone tell me how much longer he may have please

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  • Am so sorry HORSEHEAD . Have watched that fast downhill ride in CBD. No doubt PSP is the same.

    No. I don't think anyone will give you any idea! However, as carer of your loved one, you have recognized that progress is much more rapid. That was my indication that there was less time.

    With my husband, he had 6 weeks left when I shouted at doctors to recognize what I was seeing!

    You understand now that it is coming to a conclusion. Look for infections, poor breathing, reduced appetite, difficulty swallowing. I saw them all.

    Gather yourself together. Get help for you both, and some counselling/prayer. Get your family to visit if you can. Make the best of what time you have left!

    I understand how you must be feeling! Try to come to terms with those feelings. Try to get your loved one to understand too. It took mine by surprise much later. Don't know if it helps if they do know! You will know.

    Try to take heart in that the disease has almost run its course.

    Am thinking of you both! Hang in there. I am praying for you both to find peace.

    Hugs to you both.

    Jen xxx

  • thanks jen he has had difficulty eating and breathing for some time but now it is nearly all the time

  • Carers of loved ones with PSP may give you a closer timeframe than I can. Ours with CBD was very short but should not be taken to represent time you have left with your Dad!

    I joined this site at a similar stage to you and I know you will find answers to all your questions here! As well as a wealth of support and love and understanding of your situation. Something I know you can't find any-where else!!!

    Hugs, Jen xxx

  • Hi I too have seen a sudden change in my partner I have a feeling its not going to be too much longer now he has had this for 10 years he must go into nursing care today (if i can manage to get him there!) for 2 weeks while a new bed etc is brought into the home. I really feel the time is near its very hard and I feel shattered with it all and lots of tears xxx

  • thanks my dad has been in care now for about 6 months the only thing that they can do you cant is provide safety rails and pureed foods as far as that goes he would get more supervision at home the amount of falls my dad has had due to being on his own could of been prevented

  • My husband also has PSP 10 years. In the last few months he has dislocated his shoulder 3 times and there is a decline in him, but he is still fighting hard. I dont think any of us can say how long as each PSP patient gets each symptoms at different times there is not a clear pattern. I understand how shattered you feel its so hard. Try and take some time for yourself in the next 2 weeks. xxxx

  • Hi there. So sorry to hear of your dads decline. I see changes in my hubby every so often but i dont know any answer that would help you. Think they're all different. A very difficult time for you. Take care. Marie

  • Sending big hug and much love

    Lots of love

    Heady

  • If he cannot eat or drink at all, his time is not far off. If he has been gagging so much, he might have aspiration pneumonia, which also could cause the confusion, and might not be recognized by nursing staff, as some psp patients don't have fevers as others do. Pneumonia might make the end come faster. I'm very sorry for you and your family. Love, ec

  • I agree with EC. I'm sure the time is near, but may seem like an eternity. But once they do pass, you wish you had more time. At least I do. With my wife, her temperature would swing back and forth from normal to 103 to normal, all within a few hours. And as she would aspirate more, her O2 would drop below 90, eventually below 80, and about an hour before her passing it was under 50. You need to have an oxcimeter on hand to check his O2 and heart rate periodically. The heart rate also will run higher towards the end.

    God bless you and your family during night this difficult time.

    Ketchupman

  • I'm so sorry to hear about your dad, last night I went to the home where my mother in law will be placed. I started talking to the director about the final stages of life, she told me something that eventually will be very comforting to all of us. The sense of touch and smell are the last things we as humas feel before going. I know this may not answer your time question I hope it helps with the transition...

    Being there holding thier hands, making them realize they are loved...I hope his suffering will end peacefully, he deserves that much

    Keeping you in my thoughts and prayers

  • My dad passed last week and he went peacefully in his sleep. the 48 hours before passing he became vacant and no reposnse but he still held my hand and held me when i hugged him I just wish i knew he was actually going into a slow like comer.

    Its brings me comfort that he did the same with all my siblings and mum so he must of knew his time had come even if he was comer like. Like this lady my dad could not not doing anything is those last hours but going into a deep sleep brings me comfort xxxxx

  • forgot to mention he had CBD for 8 and half years x

  • Hi Rologirl79, I am so very sorry of your dads passing, I know you have heard that he is in a better place now from so many people, but I can imagine that you still want your 'old' dad back. I believe that when you die you are brought back to your original self, happy and peaceful. Things that once mattered don't anymore.

    I am happy that you all were able to hug your dad and I am sure he felt it, knowing he passed in peace must bring you great comfort...

    my condolences to you all for helping him fight a great battle

  • HH, I like what everyone has said especially that of Jen, ec, and Ketchupman.

    Do call on dr and give symptoms....this may be something that can be healed. But like the experience on this site has proven over and over; it may be a very good thing to be as emotionally and spiritually prepared for the inevitable as you can be. Call on family... are there other siblings who could be with dad while you take a break? Remember to care for you too. And do know you are not alone, we are hear for you.

    Since Touch and smell are senses that we still have up to the end....continue to stroke him and tell him you love him and make sure theres fresh air.....Maybe read to him or play him some favorite music . I am sorry HH, again we are hear for you

    AVB

    a prayer for you...taken from the Psalms and IThessalonians

    I will be glad and rejoice in thy mercy: you have known my soul (oh Lord) in adversities....Psalm31:7

    ....Please Lord help us remember:

    God has not appointed us to wrath, but to obtain salvation by our Lord Jesus Christ. Who died for us, that whether we wake or sleep, we should live together with him. Therefore (help us) comfort each other and edify one another, even as also you do (for us Lord).............I Thessalonians 5:9-11

    Amen

    Hope this wasn't too much just came to me....Take care of YOU HH!

    ((HUGS))

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